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an important essay on the current state of affairs in CCSVI research and treatment by Marie Rhodes:

A long time ago there was a commercial about a financial services company. The commercial opened with two well dressed people sitting in a swank restaurant. One says to the other "Well my broker is E.F. Hutton and E.F. Hutton says....." the noise of the restaurant abruptly stops as all the other patrons and restaurant staff lean in to eavesdrop so they too can learn what "E.F. Hutton" has to say.

This commercial exploits our belief that somewhere "out there" is an expert who can solve all of our issues; the mega-mind with the true inside scoop on what we need.

CCSVI research has not reached a place where "inside scoops" are known; everyone is still working and publishing to publicly define what they have seen so peers can review it. When published, these works represent the collective medical knowledge about CCSVI as it currently stands.

Pre-CCSVI, IR doctors commonly treated stenoses in central veins for cancer patients. Such procedures give them skills in dealing with central vein stenosis, a critical step to being able to treat CCSVI. Some docs have a lot of experience with this. Yet this kind of treatment differs from CCSVI because it is very straightforward and it's narrowly focused on the stenosis itself. It doesn't look at or evaluate the cerebrospinal venous system as a whole and how it might be affecting the brain. CCSVI treatment is a whole new ball game.

CCSVI treatment is only partially about the stenosis; it is also about the brain's blood flow and how we need to think about that. For example, one of the critical debates inside of CCSVI has to do with whether the biggest problem for people with CCSVI is venous congestion or reflux in the brain.

One group of researchers thinks the main problem is congestion; the fact that the blood gets backed up behind the stenosis. They agree there may be reflux but assume treating stenoses and thus congestion will make it a non issue.

Another group believes that the bigger problem is reflux. They think churning and chaotic flow of reflux is the most damaging element in CCSVI even if there isn't obvious gross congestion.

Dr. Zamboni falls into this second group. For him and his research team the key diagnostic is a highly specialized Doppler examination which tells them whether the procedure to repair the stenosis made the blood flow smooth and "laminar" as it goes through the system, which means the blood flows straight through the veins without churning.

Many doctors don't have this kind of specialized Dopplers available and they have no way to check for reflux after treatment. They rationalize that if they remove the stenosis and congestion is gone then treatment is a "success". Yet this assumption may be premature and it will be some time before we know if docs treating CCSVI must use dopplers to evaluate whether treatment was successful. The congestion vs reflux debate is still open.

Another example of unresolved CCSVI debates is which techniques are the most effective and helpful for treating CCSVI. Dr. Zamboni has reported in peer-reviewed papers that exploring the wider venous system including areas like the lumbar veins and renal veins are important to understanding the whole CCSVI picture; he makes it clear that in his opinion it's not just about the neck.

In "Venous Collateral Circulation of the Extracranial Cerebrospinal Outflow Routes" by Zamboni et al 2008 they discuss at length the collateral pathways that re-route the blood in CCSVI. This includes the renal vein. In another paper titled "Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis" he discusses at length the importance of investigating the lumbar veins.

Currently, some investigators studiously explore these areas when doing CCSVI type procedures believing that this will result in the most thorough exam and the best possible result given what we know at this point in time. Others have come to the conclusion that there is little reason to explore the renal and lumbar veins based on their best understanding of the venous system.

Such questions are THE scientific debate about CCSVI treatment. That is what the current research is all about. As researcher doctors document what they see and submit it for peer review and publication this information and understanding will become part of the knowledge base and part of the scientific debate. Other researchers and peers will discuss and attempt to replicate the first researcher's findings. Eventually this will result in best practices guidelines.

It will take time before we get to a place where best practices can be endorsed by guiding bodies like the Society for Interventional Radiology (SIR). At that time issues like whether/when to check the lumbar veins and when/how to treat will be laid out. Currently, treating doctors do their absolute best based on their individual professional experience, knowledge and opinion to offer the safest and hopefully effective treatment to alleviate blockages on a case by case basis.

There are no established and widely acknowledged best ways of doing the best treatment yet. All of the doctors recognize this, but do we?

Recently there has been some patient chatter that amounts to "Well, my doctor is E.F. Hutton and E.F. Hutton says....." This implies that Dr X is the top guy and has somehow gotten ahead of the research and cornered the best techniques. It's important to recognize that there are no experts with all the answers at this point in time, even though different patients understandably feel loyal to the person that helped them feel better.

No one can guarantee successful treatment and no one can guarantee that their approach is the best.

However, I thoroughly believe everyone who has put their career and their reputation on the line in order to be part of this world-changing work is DOING THEIR BEST based on what they know and believe with what is currently available.

Bottom line: let's not participate in these one-up debates. While you might want to share your experience, please avoid language that is meant to imply that your guy is "E.F.Hutton". Not even Dr. Zamboni wants us to think of him like that.

Want to learn more about this topic? I have an entire chapter in my book about treatment: stents, blood thinners and stuff like that people participating in this research need to know and should have at hand. If you haven't got a copy just go to http://ccsvibook.com~Marie

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I think of Marie often, given out more books than can count with pleasure. Yesterday I had an appt. with a Dr who's been around quite awhile, he's new for me so of course my MS came up as a "current medical condition".

Soon as I mentioned CCSVI, boy did his ears perk up. So today I brought him a copy of the book and my vid and we had a long discussion about it. He has a few MS patients so anything coming along in that regard he's all ears.

It's so great to be able to hand somebody something written mostly in their language, to at least break the ice and get them up to speed. Then they can see you and gauge for themselves. He's going to read it before our next follow up tomorrow morning so we'll see what happens. I'm all about the networking and most Dr.'s don't operate in a vaccuum, they have colleagues who have colleagues who have colleagues.

There is much fertile ground out there. I, we, are not selling anything.

CCSVI sells itself. Very well put Marie, I second that emotion. I'll be printing this out and taking it to my new Dr. tomorrow.

Last summer was when it became obvious that different doctors were treating differently and the issues were greater than stents vs no stents or when to use them. Withtechniques not standardized it is up to us to understand and choose our doctor carefully. When you pick a doctor you are picking his techniques. This can be more aggressive or more conservative. People have suffered permanent consequences. Much is yet to be settled. For myself I wanted ivus, true anticoagulation, check for MT, experience, conservative.

Next let's remind ourselves what a syndrome is (merriam-webster dictionary):
- a group of signs and symptoms that occur together and characterize a particular abnormality or condition

Prof Zamboni and colleagues have identified stenosed vein valves as the major issue (see above paper).

The next stage is treating CCSVI syndrome. The Zamboni team call this PTA but most patients refer to the treatment as "balloon venoplasty".

There is lots of discussion on the best methods but no widely agreed method. My personal advice is use a conservative method as the treatment is work in progress. Choosing your CCSVI practitioner is a personal choice.

I disagree with Marie beause of her discussion:
"CCSVI treatment is only partially about the stenosis; it is also about the brain's blood flow and how we need to think about that. For example, one of the critical debates inside of CCSVI has to do with whether the biggest problem for people with CCSVI is venous congestion or reflux in the brain."
Marie moves into theory. I say we DO NOT KNOW the answer to this, instead, keep it simple:

- treat CCSVI syndrome without harming the patient.

As CCSVI advocates we should promoting "treat CCSVI syndrome without harming the patient" position and leave the researchers to answer the 'why' over the next 5-10 years.

My direct message will, I realise, ruffle feathers but I want to help pwMS receive therapy for CCSVI syndrome. Rather than debate the role of CCSVI in MS etiology......

I disagree with Marie beause of her discussion: "CCSVI treatment is only partially about the stenosis; it is also about the brain's blood flow and how we need to think about that. For example, one of the critical debates inside of CCSVI has to do with whether the biggest problem for people with CCSVI is venous congestion or reflux in the brain." Marie moves into theory. I say we DO NOT KNOW the answer to this, instead, keep it simple:

- treat CCSVI syndrome without harming the patient.

As CCSVI advocates we should promoting "treat CCSVI syndrome without harming the patient" position and leave the researchers to answer the 'why' over the next 5-10 years.

I disagree. As an advocate, I want people to engage with the CCSVI theory as well as hear the experiences of those who have had it done and the varying opinions of the different doctors. The goal is to have each one of us as fully informed as possible before making a decision to seek treatment or hold off.

I find the venous congestion vs reflux debate interesting, because of a personal belief that the relief of congestion-related hypoxia is responsible for some of my immediate and lasting improvements, such as seeing colors much more brightly. Dr. Tucker's explanation of addition of pressure when two waves meet is a compelling explanation of how reflux could do damage. So it makes sense that both congestion and reflux are not good for our brains.

Back to Marie's original post, when she says that all the doctors involved are doing their best, that does not mean that all doctors are equal. CCSVI is a challenge. And there are innate differences in how the doctors engage with such a challenge. If you had a newborn baby, you would not hand it over to just anyone; and in my opinion, our jugulars are just as precious. Rather hyperbolic, I know, but I want those reading this to take care and tread carefully.

Hello Cece,Let's agree to differ on understanding the theory of MS and CCSVI by CCSVI advocates. My experience of studying MS tells me that there is no one who can combine the ideas of CCSVI and MS into a unified story. The problem I see with trying to do this is that CCSVI advocates/doctors write/say things which do not fit into the big picture/jigsaw of MS.This is even true of Prof Zamboni. In his early papers there is a focus on iron causing damage. The recent paper calls CCSVI a syndrome also MS as multifactorial. This is a shift in message over time, which should be expected in scientific research.Trying to explain to much and getting it wrong, helps the neuros discount CCSVI.Kind regards,MarkW

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